I think that one day they are going to find a missing link for celiac testing. I think there is another antibody or a whole different substance in the body that they haven't discovered yet that will point to celiac.

There are too many of us on this board who were deathly ill and debilitated yet we were either only positive on one or two of the tests in the panel or we were barely over the limit positive. Or negative which is just shameful. If someone is that sick, it's not logical that their antibodies will be that low. Something is missing.

Or there is some sort of inverse relationship that they are missing.

Celiac testing is one of my biggest sources of anger about this disease. I HATE seeing all the hell people go through on here who are clearly sicker than sick and yet their tests come up negative and they don't know what to do. I hate and loathe even more when they have a big reversal of symptoms when they try gluten free but they doubt themselves or feel like the celiac stepchild for not being "real" bonafide celiacs.

I hate the gluten intolerance label with a purple passion. It lowers people's expectations of what the disease can do to you. It makes them feel like it's not as serious even though in their heart they know it is. And I think the majority of intolerant people are celiacs who have been failed by the crap garbage that passes for testing. If you say you are intolerant there is not a waiter or restaurant manager in the world who is going to take you serious and good luck getting most docs to take that seriously too.

The most discouraging thing I have seen in a long time was that article about how bad endoscopies are. Dr. Green or whatever his name is (Is it Green? I forget)insists it's the "gold standard." He's not far from me and he refused to take me as a patient because I refused endo. I got a positive blood test and I wasn't consenting to invasive procedures and eating gluten any longer. I was going to die if I kept eating gluten as far as I could tell.

The stats on endo were abysmal. Most doctors not performing them correctly, reading the results wrong. People's lives are at stake.

Long time since I have been hanging around here. I miss everyone and all the passion and support that got me through the darkest times in all of this. I agree with so much of what you are saying. I hate to hear the old standby suggestion to "make sure you keep eating gluten (uh.. poison) until after all the testing is done" garbage. I tested negative but the evidence was so overwhelming that the doctor did the scope anyway. Thing is, I was fortunate to have a good gastro who did it right.. or maybe was lucky. The damage can be very spotty and the samples they take from random locations might miss it altogether thus giving the appearance of no atrophy. It didn't matter in the long run whether I got the ok from the doctors or not. There was no way anyone was going to get me to "challenge" by eating anymore poison. I was dying and when the light bulb went on, there was no turning back. I knew and that was all that really mattered. It's nobody elses' business as to what my official DX was (even though I did get a positive DX for celiac.) oOf course, that's a lot easier for me to say now than it was back then. It was brutal at first. All I know is that when I went rigorously gluten free that I went from dying to recovery and from recovery to living and from living to thriving. Granted, I still have a ways to go but just this past fall I was talking to some rheumatoid arthritis researchers about how, after my celiac diagnosis and switch to a very low carb gluten free diet and strategies to restore my gut flora, that my supposedly irreversible joint damage sort of kind of began to reverse. My hands, which used to be claws are almost completely back to normal. My elbows, which I could no longer fully straighten to within about 15 degrees of straight, are now capable of full range of motion. I have no gel time when it used to take two plus hours to get past shuffling. Thing is, according to the initial blood work, I shouldn't have received the scope. Even with all that Fasano is doing and that others have contributed to the field, I don't think we're anywhere close to putting it all together in a way that is truly helpful. I think that the commercialization of the celiac diet has messed things up so severely that many are no better off than pre diagnosis because of it. I live and eat on the lunatic fringe now but do so happily because I have my life back. The perfect storm, the confluence of so many food and environmental and medical (pharmaceutical) changes that have happened over the last fifty years are wreaking havoc with our genetic expression and we are the proverbial canaries in the cage.. but the cage is getting mighty crowded. Anyway... rant over. I have way too much catching up to do here and I hope I see some old friends. CS

The long years I spent undiagnosed cost me dearly. I lost all my freinds and family has pretty much turned their back on me. Now I have no one. I lost my only freind yesterday. My little dog was the only one I had. He was the only one I could talk to. The only one who would go for walks at the lake or keep me company in the yard. The only one who was always there for me. I tried to call my kids but they didn't return my call. One ring, go to voice mail. Which I know means they saw who was calling and chose not to answer. Don't know if I will get a call back or not. One of them has even told me they forgive me for being so sick for so long. They 'forgive me' like I did something wrong or chose to be ill for most of their lives. I did the best I could but it was never good enough.Pooh was all I had. Sometimes I wish I was never diagnosed as the pain would be over by now. I get so jealous of folks who are diagnosed after only been ill for a few months. They still have a life ahead of them. Sometimes I feel like I am just living waiting to die. I have nothing and no one. It hurts so much. Sorry for the depressing post I just needed to get it out.

I can relate to so much of your pain and I cry for you a bit today. You have been one of the very important people in my life as I have struggled to recover from this. You are an angel here on earth and I only know you through this forum. Pets are family and I understand your loss. Prayers from here to there for you. Chuck

I was pale and prone to burning when I was at my worst healthwise. As I have recovered and vitamin levels have returned to more normal ranges I have found that my overall color has gotten much better. I received a number of comments to this end as recently as yesterday. Have you had your Vitamin D levels checked?

I think I am noticing the gray going away. The biggest change was going from hair that was like dried straw to soft and finer hair. I will have to summon the courage to ask someone if it appears that my hair color has changed in the last few years. I have color blindness issues and it has always been harder for me to tell.

First of all I just want to thank-you on behalf of your hubby. I'm the celiac in my family and I am grateful for having a great partner who is totally supportive. Mistakes happen...forgive yourself. You make awesome decisions everyday on behalf of your husband.

Ooh, I agree with this wholeheartedly. Thank you for being such a concerned support to your husband. The craziest little things can sneak up on us and catch us unawares. Example. I just got had this past weekend. Totally innocent. My boys and I have been working on a toy prototype. We got distracted by one component and ended up making a blow gun/dart gun with which we were having riotous combat around the house. After several days of this I got hammered Saturday evening but what I thought was a CC episode. Only thing is, I fix my own food in my own prep area and my family is quite good about being careful, bless them! It was then I realized that we were sharing a blow gun that the kids had been putting up to their mouth, probably a cookie or sandwich between some episodes of our warfare.... BINGO. That explained all the neuro symptoms and shutdown I was experiencing. Now I know.. Now you know. I am amazed that you managed to keep it together with all the business you had to attend to. Give yourself a healthy dose of forgiveness and everything will be better.

This is fascinating. I learn more here every day. I wish the rest of the internet was filled with this much intelligent, passionate and compassionate discussion of things that really matter. Just had to throw that in here. Thanks for the education.

Serum negative for celiac, very positive for RA (RA Factor in the 800's when anything +17 is considered positive for RA,) had RA to the point of crippling, finally Dx'ed for celiac by endoscopic biopsy. went paleo gluten-free and within forty eight hours the RA started to do a disappearing act. Even the "permanent" joint damage has healed in the last several years as a result and I need take no meds for RA at all.

Actually, I think the bright spot in all this is that she was curious and talking to you about it the next day and that she admitted it without any excuse or cover up. She will learn. It's those in denial and who deflect the blame or pretend it didn't happen that you have to avoid at all costs. I am sure your mom does feel bad but, even in your present pain and discomfort, joy in the fact that at some level she might be starting to get it. No one will ever see it completely as through our eyes but there are many friends who will understand more than others. If one of those friends is your mom you are lucky.

A lot of familiar sounding things in there. You have the answers you need. Your reaction to your change in diet is better than any medical opinion. Be strong, be well and stick to your gut instinct whenever you run into doubters. Glad to hear that things are turning out well.. for you and your son. Living in the land of knowing is such good place to be.

First question: How long have you been gluten free?
Second question: What complications do you have as a result of celiac damage?

These two would give a baseline of where to start. If you had considerable complications,now would not be the time to cut back on calories. What you need are nutrient dense unprocessed foods and likely supplementation to foster the healing that needs to occur. Then, later on, be more concerned about body fat issues.

I will sound like a broken record here but the easiest way to lean out if you are sufficiently healed is to go with low carb, paleo with lots of good protein and healthy fats. I had considerable body fat before diagnosis four years ago. Now I eat exclusively paleo and anti inflammatory to keep my RA in check with no alternative grains, low carbs, plenty of meats and fats and I run below ten percent body fat.
If you would rather go with something that seems less radical I would suggest checking out the specific carbohydrate diet. Don't know where you are as far as sweets and fruits but with all the side issues we celiacs can develop there can be real issues with nutrient partitioning and blood sugar regulation that can drive insulin response thus driving fat storage. It isn't just about cutting back on calories. A calorie is not always just a calorie. I eat large satisfying meals now and no longer need to count calories. I know I will probably get taken to pieces here for this but I really recommend you look into the above to see if anything will help.
Good luck.

I do understand why you are wanting to get some context by looking back. If I could suggest that you check out something that might be helpful I would say go look up Robb Wolf's Paleo site. They are doing some incredible things with blood sugar derangement issues. From where I was nearly four years ago to now, I would try to be encouraging to you. I was ready to be done back then. I have never felt better now. I am currently taking a break from having worked in the shop all day doing prep work to weld a prototype together. Four years ago all I could do was sit in a chair staring at the ceiling most days and could barely walk. I am very strict paleo and very low, low carb with lots of good fats. Things have been healing on me that doctors told me were irreversible. You, like all of us once properly diagnosed, are in glorious days of grace. I know it's a battle, especially when you look back and think what could have been if you had only known. I understand that completely. It takes time to heal body, mind and spirit. Be patiently impatient in these new found days of grace.

Truth be told I am becoming more convinced that symptoms like this, my own included, have their roots in gut flora damage caused by antibiotics among other things. Unless and until that is re-established the food list will just keep shrinking. The pro biotics I took just made things worse, definitely not anywhere close to a full spectrum of proper gut flora in even the best. Read up on the human microbiome project and you realize that there are perhaps more than 3000 different strains of microorganisms in the healthy gut. If the ones that are out of balance already.. even to the point of SIBO .. are the ones that are in the probiotic you are taking it will just serve to make the problem much worse. I was trying to re-establish my gut flora without the use of any supplements. Whole food only. It was a difficult process in some ways and there were some rough days as I went through what seemed to be a very drastic yeast die off while drinking the whole milk. I can definitively say that I make it on two large meals a days and am not very hungry. Granted, it took me years to get to the point of finally trying this. That hunger I experienced was unbearable and I could not eat enough food. The more I ate, especially carbs, the hungrier I got and the more weight I lost. I hated being starving all the time. Now I work out heavy, do hard physical labor and have no problem with hunger. Whereas I am not gaining much weight, I am gaining considerable strength. I take that as a good sign. This stuff can make us crazy to the point of irrationality. I would be very curious to see how you reacted to a much lower carb intake but, seeing what you can't eat, don't see how to accomplish this vegan-wise. It's a catch 22 situation. That's why Elaine Gottschall's book, breaking the vicious cycle" was such an eye opener to me. Your body is definitely trying to tell you something with the extreme hunger after workouts. Sounds like you are missing something there.